The mother of a young girl who has had her hand amputated as she battles a rare form of cancer says she is a “superstar” who is refusing to let it slow her down.

Lily Anna Sebestova was just six years old when she was diagnosed with a rare form of cancer in July 2021.

On Newstalk Breakfast this morning, her mother Lorraine said Lily underwent months of treatment at Crumlin Hospital after she was diagnosed with alveolar rhabdomyosarcoma – a rare type of cancer in her hand.

Her treatment was initially successful with radiotherapy essentially killing the tumour in her hand.

She then underwent 12 rounds of maintenance chemo and on her very last round, the family learned that the cancer was back in her hand and had spread to her lung.

“The tumour was removed from her lung and she did have radiotherapy on that as well but unfortunately, you can't do radiotherapy in the same area twice,” she said.

“I think from day one, we had pretty much said, ‘Look life over limb please, give us our daughter’ and unfortunately, that's what did occur in September – we had to amputate Lily’s hand.

Lily Anna Sebestova. Image: Irish Cancer Society

She said that ‘being the little trooper she is’, Lily donated her hand to science.

“It's not really a tumour that you come across very often and because there is no research as such on this tumour - I think 1976 was the last time any kind of research was done on this particular kind - we felt that, you know, if Lily can help change the world, so be it,” she said.

Treatment

Lorraine said Lily is now undergoing chemotherapy once again and is staying strong.

“She's just a superstar; like, she got her hand amputated on a Monday and we were home on a Friday and she was up making pancakes with me the following morning,” she said.

“You know, it never stopped her. The only thing that we have to do is tie her shoelaces; she'll give out to us if we try and help her.

She's very independent, very strong-willed, which I think stood to her throughout all of this.”

She is in the middle of a 12-round chemotherapy plan.

“It's intense and it's scary and she's quite sick while she's going through it, but you know, we've got a great crew at [Crumlin] Hospital in St John's Ward and they make her life so much better,” she said.

“She's ‘Nurse Lily’ over there and takes over the desk and they're just brilliant with her – brilliant.”

Complementary Therapy

Lorraine said she is delighted the Irish Cancer Society is investing money to ensure the hospital’s Julie Wren Complementary Therapy room can stay open into the future.

The charity yesterday said it was investing €400,000 in the service in hopes of supporting 1,000 families with over 5,500 complementary therapy sessions over the coming years.

Lorraine said the room is a huge support to families.

“Especially when we went in first, we were very isolated because of COVID and of course your head is spinning and you don't want to leave your daughter’s side and you're looking at these little kids getting sick and losing their hair and it's very difficult,” she said.

"The Julie Wren is the most beautiful room, just outside the ward with two beautiful women that help with the aromatherapy and everything else inside there.

“It's a little bit of time out from the ward and it's time away from the parents for a few minutes for the kids and they go in and they can have reflexology, they can just relax.

“Lily is a little bit of a talker, so you know, they will entertain her inside there for a while.

“It's a really safe space, you know, and it's wonderful to see complementary therapy, you know, especially with medicine – it’s just brilliant there, to be honest."

Julie Wren Trust

The room was originally opened in 2011, pioneered by the generosity of the Wren family and the Julie Wren Trust.

The family sold the family farm, following the death of their daughter Julie (8) from cancer in 1993 and used the funds to help create the service, which helps children with cancer and their families manage stress, anxiety, pain, and nausea.